Wednesday, February 10, 2016: Rev. Rauni Salminen, the CEO of the Philip Aziz Centre and Emily’s House has been awarded the prestigious Member of Merit by the Order of St. Lazarus. Rev Salminen was awarded the honour because of her leadership and vision in hospice palliative care. As co-founder and CEO of the Philip Aziz centre for Hospice Care and Emily’s House pediatric hospice she is being recognized specifically for bringing to life her dream of building Toronto’s first pediatric hospice; a feat achieved through her passion, compassion and determination.
At a time when the importance of quality palliative care is overshadowed by a national debate over euthanasia or medically assisted death, it is more important than ever to increase awareness, support and access to hospice care. Where there is better access to quality end-of-life care, there are fewer requests for physician assisted death. (Huffington Post Canada, 2015). As the World Health Organization tells us, palliative care "intends neither to hasten nor postpone death". Palliative care is designed to improve the quality of life of patients and their families as they face life-threatening illness. It's a holistic approach designed to affirm a person's life both physically and spiritually, manage pain and provide support for bereaving families.
The Pediatric palliative population, though small, also requires hospice care that is specialized. Emily’s House has been a lifeline for countless families during the most difficult and darkest of times. Just two-years-old, the hospice’s 6 beds are regularly filled by children with complex, terminal illnesses. Its personalized family-centered programs are delivered by professional medical staff and rigorously trained volunteers, including respite care so that families with a sick child can take a badly needed break, as well as pain and symptom management, acute end-of-life care, and bereavement care.
The services offered by Emily’s House are endorsed by the SickKids Advanced Care Team, as well as CCAC and community clinicians and agencies. Most working in the field of palliative care fully appreciate the need for increased care options beyond what a hospital can provide — and at a fraction of the cost. If we truly put patients first, we need to hear and respond to the needs of families caring for complex care kids, with illnesses that have no cure; these families provide this support around the clock and with limited supports.
Dr. Adam Rappaport, of Sick Children’s Hospital and an active partner in Emily’s House notes, “Children are not just little adults; dying children require unique care. Whereas the vast majority of dying adults prefer to be at home at the end of life, the same cannot be said for the families of dying children. While more than 80% of adults receiving palliative care in Ontario have cancer diagnoses, cancer accounts for less than 25% of the patients we care for at the end of life. The vast majority of children receiving palliative care in our province have complex technology-dependent congenital or acquired neurologic disease. Their medical challenges frequently result in difficulty providing optimal care at home when they are “healthy”.
As a representative of SickKids, a major partner of Emily’s House, I want to say how impressed my team, and indeed the hospital, have been with the quality of care provided to our patients and families. It has been a pleasure working together over the past 22 months. As an institution with the highest reputation, we have grown very comfortable sharing the care of our most vulnerable patients with your capable and compassionate staff.”
For parents facing the loss of a child, the warm, home-like setting of Emily’s House without the pressures of caregiving alone at home, is a godsend.
“It was the best possible place we could have been in the worst possible situation,” says Erin Gross, whose daughter Kiera was left with minimal brain function after suffering trauma during at birth.
With no hope of recovery, Erin and her husband Kyle sought out palliative care for Kiera — six days after she was born — and say it was only once they arrived at Emily’s House that they finally felt like her parents: “We were able to do the normal things that we’d always imagined doing, such as changing her diapers, bathing her, taking her for walks and sleeping with her,” Gross says. “Everyone around us worked tirelessly to ensure that our only focus was our daughter, and spending every precious minute we had with her.”
Knowing Kiera’s last breath was near, the clinical staff, play therapist and chaplain created a peaceful setting for her family to say their final goodbye.
“We needed the support, care and expertise that we received at Emily’s House,” Gross says. “We would not have experienced the end of Kiera’s life as positively as we did if we had taken care of her at home, or in the hospital. They helped us turn a terrible moment into a truly beautiful one.”
Whether a child’s life is measured in days, weeks or months, the hospice is committed to ensuring it’s quality time that creates positive and meaningful memories for their family.
“When there is no cure, there’s still support, compassion and care at Emily’s House,” says Salminen. “A place where kids can be kids and parents can be parents. We are urging everyone in our community to provide the support that will allow us to continue helping children and families through their most difficult days.”
The Philip Aziz Centre and Emily’s House communities are very proud of the work that our volunteers and staff have done to produce such a level of excellence in palliative care. We are indebted to Rev. Salminen for her passion and commitment to making our programs a reality for families in need. We are thrilled that she is being recognized by the Order of St. Lazarus and we thank them for their recognition of her tremendous contributions to the field of both pediatric and adult hospice care.